Not Suitable for Friday’s Faafee or Powerball Draws: Big Numbers Part 1

Heart NumbersThere’s a reason I love words more than numbers. But I’ve realised over the years that not paying attention to the big numbers in any area of my life can lead to serious problems – it can even be a life-threatening oversight.

Numbers now feature huge in my life from the point of view of my health. What is my blood pressure? Temperature? Weight? Oxygenation? Pulse rate? Rejection factor of my new heart? Blood counts and markers? Just to name a few.

Over the years, as my heart condition has evolved, other numbers were watched closely. There have been periods when I’ve had to stick to a limit of 1000 ml of all liquids over a 24-hour period, and closely monitor exactly how much fluid I was passing out, to ensure nothing extra was being retained. Those have been excruciatingly difficult periods, ice became my best friend, especially on warm, thirsty days, measured right down to the last millimeter. And then, of course I must admit this, there were extensive periods when the good numbers simply were ignored or didn’t exist, and all that pre-occupied me was enjoying – or not – more and more of those things that exacerbated the bad numbers.

Two numbers have taken on particular significance in recent days:

That’s my place on the list of heart transplants that have been carried out by the heart team at Christiaan Barnard Memorial Hospital since the unit was started. It seems weird that hearing this number elicited such an emotional response in me.

(I will write more about the numbers of heart transplants in a forthcoming post, as well as the costs of heart transplants.)

Perhaps my emotional state reflected a sense that, not only is one not alone, but there are many who have been down this road before and who are still walking strongly many years later. It became especially cogent when I attended my first clinic for transplant patients. This happens each Wednesday in the heart unit at CBMH for those who wish to attend or for scheduled follow-up consultations, especially for out-of-town patients. The follow-up consultations usually happen at the same time as the scheduled biopsies, blood sampling or related procedures, so the team has a good picture of how the patient is doing, whether they are one month or 10 years away from when they received their new heart. For out-of-town patients, these regular sessions are very important to maintain the contact with the unit, to assess the efficacy of medication and so forth. Of course, the clinic also offers an opportunity to socialize and share stories among the transplant recipients.

I attended the clinic this week primarily to meet other recipients, and there were about 6 in the hour that I attended, four from up-country. And recipient number 215, who received a new heart just a couple of weeks before my own transplant, was also present.

Wow, what an uplifting, affirming experience. The stories, indeed, are breathtaking. People talk openly about the challenges, but within the context of “yes, I experienced that as well, but it lasted this long and then I never experienced the symptoms again” or “once my medication had been tweaked or changed, the side-effect disappeared”. For a “newby” like me who has little clue about all that is happening in my body, this was extremely re-assuring. It really is a very useful support group and mechanism.

We have also linked to online support groups which have provided remarkable insights or confirmed my own experiences.

That’s the other number that has featured big in my reimagining of who I am in this new, H2, season. It is my heart’s ejection fraction.

Remember that the average ejection fraction – the rate at which the heart pumps blood into the rest of the body – is around 60%, in fact, any rate between 55% and 70% is regarded as normal. As one’s heart weakens as a result of damage to the heart muscle during a heart attack or as a result of a virus or other factor – the ejection fraction decreases. In my case, it dropped to 37% in 2007, then progressively to 30%, until in August this year it was down to between 10% and 12%, regarded as final stage heart failure.

My doctors this week confirmed that, based on results of two echocardiograms (echos) my heart is pumping blood at a rate of 75%. That is a BIG number. From the time I was first diagnosed with cardiomyopathy, I never imagined that I would see my heart pumping at that rate ever. It’s a good feeling.

I realised almost too late that I had to get familiar with my important heart numbers.

Don’t mimic my poor example. Don’t ignore the negative numbers. Take action to turn them around. Support the positive numbers with a healthy lifestyle and regular medical checks. And take ownership of your numbers. Don’t rely on medical professionals to keep you abreast (no pun intended) of what is happening with your chest numbers. They are busy with – and maybe distracted by – the healthcare needs of scores of other, perhaps more seriously ill patients. That may cause delays in your own treatment. And they may get things wrong too. Peruse your blood and other test results as soon as they become available. Ask questions, develop your knowledge. Accept and maintain responsibility for your numbers at all times. If you’re on medication, know your dosage numbers. I was severely reprimanded one time by a cardio specialist because I could not remember an important medicine dosage (in my defence, I had just been told my condition had deteriorated and I think I experienced a bit of a stress-induced blank moment). Keep notes of your numbers on your cellphone or in a place where they may be easily accessed, lest you forget.

There are few better feelings than watching your big numbers improve.

Not Suitable for Friday’s Faafee or Powerball Draws: Big Numbers Part 1

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